Eye update: It wiggles around

Warning before you read this post! I talk in detail about the procedure for my eye injections. If that offends you, I’m sorry. I totally get it, too, as a few years ago I couldn’t have read about this either. Most squeamish of it starts about 5 paragraphs down.

First, a brief retell of what happened back in May/June.

I had an appointment on May 14th with my retina specialist. I’d known for a week or so prior that I thought I was seeing something happening in my good eye and figured, if so, it was most likely far enough along for them to see it and take care of it. I was wrong. They didn’t see it so I questioned myself, wondering if I was just overly paranoid, and tried to brush it off. He gave me my monthly injection that combats leaky blood vessels, the Avastin injection. I think it was the following Tuesday (?) that I started calling, trying to get in to see him again, because I knew something bad was happening. The lines on my Amsler grid, a daily vision checking tool, were breaking and disappearing. That’s not good.

The nurse I talked to was one I’d never met. She told me to just go and see my regular eye doctor, that it was probably nothing. I did go see my regular eye doctor and he was as helpful as he could be but admitted he had no idea why they’d sent me to him. He’s an eyeball doctor, he said, not a retina guy. I tried several times over the next few weeks to get in and see my retina doctor but I KEPT GETTING THAT NURSE! By the time I saw my retina doctor I’d (temporarily) lost most of my central vision in my good eye and was relying on peripheral for everything I did.

I cried a LOT those couple of months. Oh, and when I did get in to see my doctor and found he’d never been told I was calling, oh, that was upsetting to all of us (him, Mike, me, ….)

I started the low-dose chemo meds, Methotrexate, last September, to settle my immune system and keep it from attacking my sight (with outbreaks of the inflammatory disease). Those six little pills every week were not kind to me but I took them, faithfully, knowing how bad I’d feel for the next few days, because I want this disease gone! I don’t want to go blind! My June visit showed the inflammatory disease was back, a brand new outbreak. Meant the chemo pills were not working after all and I had to go back to getting the steroid capsule implant every three months.

Good news, my reactions to the injectable Methotrexate, (was switched to a bit of a higher dose that’s injected rather than pill form) aren’t nearly as debilitating! I had my second steroid implant Monday, something I, as weird as it sounds, look forward to because I know how well they work to fight the inflammatory disease. Those little capsules keep me sighted! When they give ocular injections they start by giving you numbing drops to numb the surface of your eye (maybe a little deeper?) so you won’t feel the numbing injection that numbs deeper into your eye. Once you’re properly numbed up they can administer whatever injections they need. It sounds scary but, trust me, it’s a good thing.

The numbing injection Monday hit a blood vessel and caused a good-sized hemorrhage to form. This doesn’t happen (to me) often but this one is the most painful yet. The last time I had this happen it took over a month to heal up/go away/whatever it’s termed. This type of hemorrhage turns the white of your eye blood-red as blood collects and pools at the surface. It’s rather uncomfortable for a day or two, then you forget about it until someone reacts in horror or you look in the mirror. Boo accidentally punched me right in that eye today while dancing (she spun, fast and hard, and clocked me square on the eye) and brought back a lot of the pain from yesterday in doing so.

It happens.

I do not have the words to adequately explain how tremendously grateful I am that there is treatment for my eye disease. I whine, a lot, but I’m always aware that we have much better knowledge, technology and medicine available now than we did ten years ago. And that’s why I can still see. That said … I am beyond frustrated right now. I’m not upset with anyone at all, it’s that steroid capsule. Sometimes it lands right smack in your field of vision and takes up to two weeks to not see it anymore. Does that sound frustrating? It gets worse. The inside of your eye has vitreous fluid, a clear gel like substance, between your retina and your lenses. That’s where the implant goes and because it’s sitting in gel, that sucker bounces, floats and wiggles around EVERY. TIME. I MOVE. MY EYE! It only takes a slight movement and it’s going in bouncy circles again until it settles.

Sometimes I never see it. One time I saw it the ENTIRE 100 or so days it was in my eye! This time it looks like there’s a clump of eye lashes dangling on the end of my eye lashes, wiggling about when I look at something else. It’s … it’s just frustrating to the point everything is getting to me. When someone at the dinner table said today wasn’t Friday I quickly covered my face, hoping everyone would think I was being dramatic, so they wouldn’t see me cry. I don’t know why I thought it was Friday, nor do I know why that even mattered. I was just …. frustrated. I excused myself and sat down at my desk. Mike came into the office and let me cry/vent to him. It gets to me badly, the wiggling and bouncing, but I’m hopeful I won’t notice it soon since, usually, I do get used to it.

This post went on much longer than I intended. There’s more to the ‘update’ but I’ll save that for another post later on. Still need to sort through it all in my head anyway (it’s not bad news, just different). Anyway, here’s to the coming days where the wiggle will be gone and I won’t look like a mad woman crying over stupid stuff!

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Posted on September 2, 2015, in Blog, Personal and tagged , , , , , , . Bookmark the permalink. 1 Comment.

  1. (((hugs)))

    Getting upset about mixing up days was probably your body’s way of releasing built up stress, the frustrations and everything. I think a lot of us kick ourselves when we confuse things or forget something and how we react when that happens will depends on everything else that’s been going on, so some days we can laugh it off while other days it’s upsetting and we want to cry.

    It’s bad enough seeing spots, squiggly lines, and whatever other types of floaters there are so I can (try to) imagine how seeing the capsule could be really annoying but think of it this way, at least you can see it. The day that you can’t see it is probably the day to worry, and I don’t mean when you just stop noticing it (I’m sure you knew that’s what I meant).

I love reading your comments. Thanks!

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